NF1 plexiform neurofibroma (PN)
Extra Special Care for Our NF1 Patients
We understand that an NF1 plexiform neurofibroma (PN) diagnosis can be overwhelming for the entire family, and CareMed is here to help. We provide ongoing, personalized support to make sure the whole family understands the recommended medication, its dosage, and any potential side effects.
What is NF1?1
NF1 is a rare, progressive condition caused by a mutation or flaw in a particular gene. It is usually diagnosed in early childhood, appearing in an estimated 1 out of every 3,000 infants. It’s a disorder that is most commonly characterized by an increased risk of developing noncancerous (benign) and cancerous (malignant) tumors, as well as various other physical and neurological manifestations.
It is estimated that up to 50% of patients with NF1 may have at least one plexiform neurofibroma2.
Treatment Options
Previously, the standard treatment for NF1 PN was surgery, but it may not be recommended. Tumors may not be completely removed with surgery, because they may be closely intertwined with critical nerves and major organs. Now, there is another option – KOSELUGO™ (selumetinib). It is the first and only FDA-approved treatment available proven to shrink PN tumors.
For NF Awareness Month, visit the Children’s Tumor Foundation to find out how you can help to “Make NF Visible”
How Can CareMed Help?
- We act as your advocate with your physician, insurance company, and others involved in your treatment.
- Education about your medication, its dosage, and any potential side effects, along with 24/7 access to our clinicians and pharmacists.
- Free shipping via FedEx. If you signed up for our texting program, you will be texted your tracking number before we ship.
- When it’s time for a refill, we have you covered. We will send you refill reminders and call you to schedule your refill seven days prior to your refill due date.
If you are a provider and would like to refer to CareMed, click below for our order forms.
2https://rarediseases.org/rare-diseases/neurofibromatosis-type-1-nf1/#disease-overview-main